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Pacientes con SFC se dirigen al CDC

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A Message From: Some Very Sick CFS Patients To: Whom it Concerns At the CDC "Chronic Fatigue(CFS) is a serious debilitating Syndrome neuro immune disease." It affects 4 million Americans and 17 million people worldwide. CFS is twice as prevalent as multiple sclerosis, and four times more prevalent in women than HIV Those whith milder cases of CFS still manage to function in the world. to work and travel and exercise. while the sickest CFS patients have symptoms as severe as those of people with late stage AIDS In the words if Dr. Nancy Klimas: "My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research... (but) many of my CFS patients are terribly ill..." "I split my clinical time between (HIV and CFS) and I can tell you if I had to choose between the two illneses in 2009, I would rather have HIV." Some CFS patients have been ill for years, and some have been ill for DECADES. barely functioning bedridden, in a chronic pain, with chronic exhaustion, and debilitating neurological symptoms like postural orthostatic tachycardia, and orthostatic intolerance. CFS can be devastating Unfortunately many CFS patients are disregarded and dismissed by doctors. as malingerers, hypocondriacs, psychiatric cases. Many doctors deny the reality of CSF, and consider it a "waste basket" diagnosis. So those with CFS are shamed and blamed for being ill, as if they causes CFS with their minds, as if they could FIX IT themselves, by having a better attitude, by thinking better thougths, by forcing themselves to exercice, when they can barely move. Doctors call these "treatments" CBT (cognitive behavioral therapy), and GET (graded exercise therapy), while most CFS patients call them crazy, wrong, and COMPLETELY INEFFECTIVE. CBT and GET will not cure CFS and can even make it worse, causing more damage, more pain, more exhausting relapses. So WHY are such ineffective, potentially damaging treatments being foisted on CFS patients? And why are there so few doctors who do not mis-treat CFS? And why is there STILL such minimal funding for CFS research... after 30 long years? Why must CFS patients continue to suffer so needlessly... for so many decades? And why have all our government health agencies FAILED US... so miserably, so repeatedly, and for so long? WHY? In October of 2009 researchers at the Whittemore Peterson Institute made a revolutionary discovery. They identified the XMRV retrovirus in the blood of 68 of 101 CFS patients tested, and in 3,75% of healthy control subjects. (Science 23/10/09) A HUGE VICTORY for those with CFS! It restored hope for possible new treatments, and maybe even for a cure. In June of 2010 news leaked that researchers at the NHI and FDA had confirmed WPI's findings. "They (also) found XMRV in the blood of CFS subjects and healthy controls." ( 13/7/10) So WHY did the CDC interfere, and delay the publishing of such crucial research? Is it because it contradicted the CDC's own negative XMRV findings? ( 13/7/10) With 3,75% of the population latently infected with XMRV, we are facing a potentially HUGE public haelth crisis. Isn't it time to put away the politics? to put an end to decades of denial? to come forth with the truth about CFS now? 17 million people's lives are at stake. The world is watching to see wath happens next. An All Too True Production © copyright 2010 THANK YOU to those who contributed to this project. To support CFS & XMRV research, please donate to the Whittemore Peterson Institute at To stay informed about CFS, visit:

Video Details

Duration: 8 minutes and 18 seconds
Country: United States
Language: English
Genre: None
Views: 123
Posted by: montseniana on Jul 28, 2010

Algunos enfermos de SFC hicieron un video para el CDC

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